5/9/11 DANGER!!!!

Joe was admitted into MDACC in the new high rise on the 15th floor at 1AM on Saturday morning if I have kept the days straight. It is truly hard to know what day things happen on when they are happening so fast and you are up over 24 hours straight. I needed to keep alert to assure Joe's treatment was on target and that his regular medication stayed on tract. It is not an easy thing to do when his medications are changing daily for one reason or the other. The second ER visit was a better experience and with better staff than the first ER visit that day.

Joe's room number at MDACC is G1553 where the entire floor is the Lymphoma floor. The room is not quite a large as Joe's last room but still nice. It just has a weirder layout but it still has the two flat screen TV's, a sofa bed, desk with chair, a lounge rocking chair and a decent view of the Texas Medical Center. I ended up staying till about 3:00 AM since I had to get Joe settled in and answered all the status questions and go over his drug list. The nurse on duty was pleased that I gave her so much detail and made her job so much easier. They immediately placed sodium cloride IV as well as a powerful antibiotic called vancomycin which will be given once a day. All the blood tests were done once again from the arm as well as from the two PICC lines to determine what bug he has picked up. Joe's neutrophil count was a very tiny 30, 60 and 20 the first 3 times they tested the blood. His platelets continue to drop which is all a normal reaction after getting chemo.

Sunday morning, Mother's Day, I was up at 9AM to take a shower then take Max to the dog park. I made it to the 11AM church service at St Philips Presbyterian Church on San Felipe Blvd. The children of the congregation gave the service including the sermon. It was delightful. After church I drove over to Randall's Supermarket to get a flower arrangement for my Chinese friend, Yan, who is working on her doctorate in Public Health at the Texas Medical Center. Her beautiful baby. Claire, is over in China staying with Yan's very loving Mom and Dad until Yan finishes her doctorate. She wants to go back to China and help her countryman. Yan's Mom stayed with Yan and Hang for about 9 months during her last months of pregnancy then until Christmas 2010 when all of them went home to China but little Claire stayed with Grandma and Grandpa. With both of us away from our family and children we decided to have Mother's Day Lunch together. It was just perfect since I needed a pleasurable break from the caregiver role. After we both exchanged gifts, we went to Champs to have lunch which we both enjoyed and caught up on family news. Each time I meet with Yan, she educates me more about Chinese culture. In China, mothers who just given birth, are expected to have complete bed rest for a full month after giving birth. The only thing she gets up for is to go the the bathroom. In China they do not have access to Facebook but they have their own Social Network.

After lunch we both made our separate ways. At the hotel my oldest son, Keith, sent me an amazing arrangement of a dozen long stemmed white perfect roses with a lovely note. Michael, my youngest, sent me the most perfect Mother's Day card with a touching statement. Keith's girlfriend, Jennifer, sent me the best book ever called "Women, A Celebration of Strength." In the package was three red hats to honor all the different hats I wear in life. It was a very thoughtful kind gift.

I did not make it to the hospital till about 3;30PM. Joe has texted me to pick him up a Roast Beef Sandwich and chips from Brown Bad Deli. Boy, he enjoyed eating it, big time. Dr Romaguera made his rounds late Sunday afternoon and we discussed Joe's situation. He stated that the initial cultures came back as gram positive cocci bacteria. Joe would have to be fever free for 48 hours and his neutrophil count must reach 500 (it was 30 at that time) before he could be released. It was the hospital's policy. Good! It is just the place Joe needs to be since if he were at the hotel, he would insist on going out for meals and doing something no matter how I would fuss. At the hospital he could be protected as much as possible. I stayed at the hospital until about 10:30 PM and headed back to the hotel to get some rest. I was so exhausted. It had all caught up with me. I was in bed at 11:30 PM and I did not wake up till 11:30 AM on Monday morning.

The day starts with getting a shower than taking Max to the Dog Park. We left the park at about 1:30 PM. Joe texted me to pick up a Big Max Meal for him so I decided that I would eat something from McDonalds also. On the text he told me Romaguera had stopped by and increased the dosage of Neupogin to 480cc from 300cc since Joe's absolute neutrophil count (ANC) was now ZERO and his platelets were down to 64. Tuesday is Joe's expected nadir point but the ANC can not go negative but we expect the platelets to drop to its lowest point on Tuesday before it starts to rebound. There were a few times that we had to get medications straighten out since we knew better and they listened to us and had paged Romaguera for clarification. They also had Joe getting only 1000 kg of Keppra once a day when it was suppose to be 1500 units twice a day. So errors can happen even at MDA. One must be on guard all the time and insist on the RN's contacting the doctor to get it corrected.

At 6:30PM Monday night, the Infectious Disease Expert, Dr Ashita, came to talk to Joe and me. He explained that Joe had a bacteria infection in his PICC (CVC) lines and that it was at such a high level of 1000 that he recommended that the line be removed and a new one place on the left arm. It will be done on Tuesday since it was now after hours. He also explained that the AVELOX (moxofloxcin) had to be stopped since it was diluting the effect of the seizure medicine, Keppra. They believed it was the reason he had the seizure Friday/Saturdat night. He stated he was replacing his current antibiotics with ones they use for TB patients but he assured us that Joe did not have TB. To keep all of the meds straight is so complex. Some meds will have to be thrown out and new ones and additional ones for the bacteria infection and separate ones for the rare mycobacterium gordonae. He said Joe was a very rare case with rare diseases and infections. A rare jewel my hubby is, has been proven medically.

I left the hospital tonight at 10:30PM since Joe was ready to call it a night.

I am so thankful to God for directing me to get Joe to the ER when he got the fever. I am thankful for the terrific care the MDA gives the patient. I honestly do not think that Joe would have gotten the care he needed at Emory since the doctors from the various departments do not work closely together with an urgency. I am thankful for Dr Romaguera calling in for the expert help from the Infectious Disease Department. I am thankful for all the prayers that Joe and I are getting from such a large Prayer Army.

Good night. It's time to hit the hay.